Amanda Owen-Smith

A systematic review of geographical variation in access to chemotherapy.

BackgroundRising cancer incidence, the cost of cancer pharmaceuticals and the introduction of the Cancer Drugs Fund in England, but not other United Kingdom(UK) countries means evidence of ‘postcode prescribing’ in cancer is important. There have been no systematic reviews considering access to cancer drugs by geographical characteristics in the UK.MethodsStudies describing receipt of cancer drugs, according to healthcare boundaries (e.g. cancer network [UK]) were identified through a systematic search of electronic databases and grey literature. Due to study heterogeneity a meta-analysis was not possible and a narrative synthesis was performed.Results8,780 unique studies were identified and twenty-six included following a systematic search last updated in 2015. The majority of papers demonstrated substantial variability in the likelihood of receiving chemotherapy between hospitals, health authorities, cancer networks and UK countries (England and Wales). After case-mix adjustment, there was up to a 4–5 fold difference in chemotherapy utilisation between the highest and lowest prescribing cancer networks. There was no strong evidence that rurality or distance travelled were associated with the likelihood of receiving chemotherapy and conflicting evidence for an effect of travel time.ConclusionsConsiderable variation in chemotherapy prescribing between healthcare boundaries has been identified. The absence of associations with natural geographical characteristics (e.g. rurality) and receipt of chemotherapy suggests that local treatment habits, capacity and policy are more influential.

Patient-reported outcomes in bariatric surgery: a systematic review of standards of reporting

Bariatric surgery is increasingly being used to treat severe obesity, but little is known about its impact on patient‐reported outcomes (PROs). For PRO data to influence practice, well‐designed and reported studies are required. A systematic review identified prospective bariatric surgery studies that used validated PRO measures. Risk of bias in randomized controlled trials (RCTs) was assessed, and papers were examined for reporting of (i) who completed PRO measures; (ii) missing PRO data and (iii) clinical interpretation of PRO data. Studies meeting all criteria were classified as robust. Eighty‐six studies were identified. Of the eight RCTs, risk of bias was high in one and unclear in seven. Sixty‐eight different PRO measures were identified, with the Short Form (SF)‐36 questionnaire most commonly used. Forty‐one (48%) studies explicitly stated measures were completed by patients, 63 (73%) documented missing PRO data and 50 (58%) interpreted PRO data clinically. Twenty‐six (30%) met all criteria. Although many bariatric surgery studies assess PROs, study design and reporting is often poor, limiting data interpretation and synthesis. Well‐designed studies that include agreed PRO measures are needed with reporting to include integration with clinical outcomes to inform practice.

The Desirability of Being Open About Health Care Rationing Decisions: Findings from a Qualitative Study of Patients and Clinical Professionals

Objective To understand the views of patients and professionals about how feasible and appropriate it is to make health care rationing decisions openly at the consultation level. Methods Thirty-one patients and 21 health care professionals were asked about their experiences of implicit and explicit rationing during in-depth interviews structured around two clinical case studies (morbid obesity and breast cancer). Sampling was undertaken theoretically and data analysis was carried out using constant comparison. Results Patients had a broad awareness of health care rationing and nearly all said they wanted to know how financial factors affected the provision of their health care. However, the experience of explicit rationing could be distressing and one patient regretted having been told. Despite a firm commitment to the ideal of being open with patients about rationing, in practice, clinical professionals encountered a number of ethical and practical barriers to making such decisions explicitly, meaning that implicit methods were frequently adopted. Conclusions The results suggest that moves in the UK and elsewhere to undertake rationing more explicitly are in line with the preferences of the majority of patients and professionals. However, the potential for distress caused through rationing openly means that further research is needed to understand whether explicitness is always the best approach at the consultation level, and professionals need further training and support to deal with the stressful nature of making rationing decisions openly.

Well it's like someone at the other end cares about you. A qualitative study exploring the views of users and providers of care of contact-based interventions following self-harm

OBJECTIVE We investigated the views of service users and staff regarding contact-based interventions (e.g., letters, telephone calls or crisis cards) following self-harm. METHOD Self-harm patients recently discharged from an emergency department were selected using purposive sampling (n=11). Clinical staff from relevant service areas and voluntary staff took part in a focus group and individual interviews (n=10). Interviews were transcribed and thematic analyses were conducted using methods of constant comparison to ensure that emergent themes remained grounded in the data. RESULTS Most service users and staff participants identified the period of time directly after discharge as the time of greatest need. A contact-based intervention was viewed by service users as a gesture of caring, which counteracted feelings of loneliness. Delivery by mental health specialists was preferred, initially by phone, but letters were considered helpful later. The intervention should be both genuine in delivery and linked to current services. Potential barriers included means of accessing the service and threats to privacy. CONCLUSION The findings suggest that an appropriate design for an intervention might be the provision of an information leaflet, telephone calls (soon after discharge), then letters (offering continuity of contact). Aspects of value and concern expressed by service users should be helpful to clinicians and service providers.

“I can see where they're coming from, but when you're on the end of it … you just want to get the money and the drug.”: Explaining reactions to explicit healthcare rationing☆

The traditional pattern of implicit and unacknowledged rationing in the UK National Health Service (NHS) is beginning to change. The advent of the National Institute for Health and Clinical Excellence (NICE), widespread use of the Internet, and the media interest in healthcare rationing means that patients are increasingly likely to be knowledgeable about their healthcare, and to learn that treatments are not available for financial reasons. However, lack of empirical research in this area means that how patients react to explicit rationing is unknown, and thus its outcomes are largely the matter of conjecture. This paper presents results from a UK qualitative interview study with patients who have experienced rationing associated with morbid obesity or breast cancer care, and related NHS managers and clinicians. In total, 31 patients and 21 healthcare professionals were interviewed, although only 21 patients knew that their treatment had been subject to rationing. Purposive and theoretical sampling methods were used to ensure a diverse sample of patients, and data were analysed using methods of constant comparison. Patients had a choice about whether to accept explicit rationing decisions, protest against them, or pay for private care. However, the accounts of many patients showed there was a gulf between their general views around the necessity of rationing and how they said they would react to such decisions in theory, and how they stated they actually reacted when faced with shortages affecting their own treatment. Among the most important factors affecting how patients reacted to rationing were their sense of entitlement to NHS care, and the attitude of the clinical team providing treatment. The findings suggest that patients need to be provided with sufficient information and support to make an informed decision following the revelation of rationing, and that clinicians need training to assist them in communicating rationing decisions.

A NICE example? Variation in provision of bariatric surgery in England

Demand for surgery to treat morbid obesity outstrips supply. Amanda Owen-Smith and colleagues find regional commissioning policies are not consistent with NICE guidance and provision of surgery varies widely

Why the NHS should do more bariatric surgery; how much should we do?

The number of people getting bariatric surgery is falling despite rising rates of obesity and diabetes. Richard Welbourn and colleagues examine why and argue that better access has potential to reduce long term costs of care

A qualitative investigation of the decision-making process of couples considering prenatal screening for Down syndrome.

The aim of this study was to investigate how couples regard screening information and how they make subsequent decisions about undergoing prenatal screening for Down syndrome.

A Core Outcome Set for the Benefits and Adverse Events of Bariatric and Metabolic Surgery: the BARIACT project

Background Bariatric and metabolic surgery is used as a treatment for patients with severe and complex obesity. However, there is a need to improve outcome selection and reporting in bariatric surgery trials. A Core Outcome Set (COS), an agreed minimum set of outcomes reported in all studies of a specific condition, may achieve this. Here, we present the development of a COS for BARIAtric and metabolic surgery Clinical Trials—the BARIACT Study. Methods and Findings Outcomes identified from systematic reviews and patient interviews informed a questionnaire survey. Patients and health professionals were surveyed three times and asked to rate the importance of each item on a 1–9 scale. Delphi methods provided anonymised feedback to participants. Items not meeting predefined criteria were discarded between rounds. Remaining items were discussed at consensus meetings, held separately with patients and professionals, where the COS was agreed. Data sources identified 2,990 outcomes, which were used to develop a 130-item questionnaire. Round 1 response rates were moderate but subsequently improved to above 75% for other rounds. After rounds 2 and 3, 81 and 14 items were discarded, respectively, leaving 35 items for discussion at consensus meetings. The final COS included nine items: “weight,” “diabetes status,” “cardiovascular risk,” “overall quality of life (QOL),” “mortality,” “technical complications of the specific operation,” “any re-operation/re-intervention,” “dysphagia/regurgitation,” and “micronutrient status.” The main limitation of this study was that it was based in the United Kingdom only. Conclusions The COS is recommended to be used as a minimum in all trials of bariatric and metabolic surgery. Adoption of the COS will improve data synthesis and the value of research data. Future work will establish methods for the measurement of the outcomes in the COS.

The usefulness of NICE guidance in practice: different perspectives of managers, clinicians, and patients.

OBJECTIVES The UK National Institute for Health and Clinical Excellence (NICE) has been widely hailed as an international leader in health technology assessment. The objectives of its guidance are to ensure uniformity in healthcare provision, and promote a systematic and accountable way to allocate resources. However, research relating to the implementation of guidance is limited, and little is known about how it influences decision making at the consultation level or how useful it is to individual patients. METHODS In-depth interviews were undertaken with professionals involved in healthcare provision at the community level, and with clinical professionals and patients providing or receiving care for morbid obesity and breast cancer (n = 52). RESULTS Although NICE guidance was generally well-regarded, in practice it was of more importance and usefulness to managerial than clinical professionals. Clinicians used a patchy approach to implementation depending on whether recommendations accorded with their personal interpretation of the evidence available, and whether funding was available locally. Many patients had not heard of NICE, and clinical professionals did not alert them to its existence. Even where patients knew about relevant guidance, they were rarely able to use it to assert their right to treatment. CONCLUSIONS These findings challenge the perception that NICE guidance results in consistent and accountable decision making, and the limited accessibility and usefulness of guidance to patients suggests more information and support is needed at the point of provision if these objectives are to be achieved.